Dear Beth and the same applies to everyone here. Beth I am following you and all of the others on this site and truly believe that we so deeply care for each one of us.
Also Beth, my do you have a way with words when I read your last post it said Dear Jeannie, Richard, Susan, Marty, et alI I just loved that et all. Do I detect a lawyer, possible a legal secretary of some kind? Now before I get on with this, I want you to know that in spite of what you have already been through or may still be going through most everyone who may have some ailments are usually frightened of something, but I have personally found that this is most probably "normal" It is the unknown that makes you or me or anyone else think, hey is this worse then I think it might be? I don't know if you may remember something that I once told to just about everyone on this site also along with a few other CML sites that I follow. And that was about your mind as well as your body acting together with each other. One's mind is so overwhelming that it can cause a lot of things to not be able to help your body, conversely your mind can operate in the exact opposite way. Which by the way there are some people that do not necessary agree with me, but I am what I am, and I have tried to train myself to operate in the exact opposite way. I decided a very long time ago during me bone marrow transplant 27 years ago that since there was little chance that I would ever survive this, but even though it was very difficult I did survive it. I am not tossing my hat up yet because I had always thought about but hardly ever mentioned it to my family. Then came my kidneys failing which put me into dialysis for four years three times a week and four hours each time every Monday, Wednesday, and Friday, believe me a horrible thing to go through. You also spoke about being lucky which I probably was because I was finally able to end the dialysis and have a kidney transplant. OK I am still not taking of my hat as yet and perhaps I may never will but that is not for me to say it all rest in the hands of GOD. Getting on with my life then came my prostate operation which I can probably compare to the four years of dialysis because of how horrible they both were, but that was what I had to endure because my life depended on it. Oh wait I almost forgot, and how in the world could I ever forget this.. My spleen being surgically removed. But I just continued to have my mind in the right place. My hat is still not yet in the air. Then out of the blue came my stroke, but I did also recover from that with little side effects. Now I am getting on to my mercer infection so back in the hospital for more surgery to me arm and right thumb, which took me several months to heal. Still not healed but from a large hole in the back of my forearm until now a very small just about closed wound. Moving on, now comes the moes surgery to the top of my head. I will be getting out those stitches this Tuesday afternoon just in time to have another moes surgery this time on my forehead. and it goes on. However this is my point: I'm certainly not complaining because that is counter productive and that's not how I see it, but rather the way that I look at is in the opposite way as I have already spoken about. And when I have my final bow then that is what it is. No one wants to die, well maybe some that are not exactly not all there, but, everyone that is born will eventually have to, it is the way that we live our lives that makes our lives worth it. I just can't put up with being afraid because it is counterproductive and ends up ruining our lives. Beth you have been through a lot in your life and probably so have most of you so let me give you some of my advice. Never try to be frightened about and medical tests or procedures or anything else because all that you have to do is simply train your mind to expect the best. I once wrote a poem about it while I was living it that plastic bubble in the hospital for my bone marrow transplant. Now you all know exactly what the meaning of 18's is... LIFE! Marty *EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.* *WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.* *EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME...* *FOCUS...* On Sat, Oct 31, 2015 at 11:45 AM, Joyce Mesnarich <[email protected]> wrote: > Good to hear from you, Beth. Hubby Wayne is also waiting for BCR > results......since Oct 12. We are in Southern IL and are also enjoying the > colors of fall. Had a few windy days lately and leaves are leaving the > trees in droves. We live along the Mississippi River Bottoms and enjoyed a > ride along the bluffs. God at his best in coloring. > I am still recovering from my mastectomy. Came down with a case of > phlebitis in my affected arm. Very painful, but it is getting better. Had > to stop my exercises to get that arm back into full use for awhile. It is > amazing how God has designed our bodies.....for them to be able to heal > themselves. > Wayne and I have just become Great-Grandparents for the first time!!! It > was a beautiful little boy with a shock of black hair.....the cutest thing > we have ever seen. Do you detect any bias here? LOL The only problem is > that the new family is in California and we are in the midwest. But we > will see them in Feb. Can't wait to hold that little bundle in my arms! > We wish all on this site a happy fall! > Joyce in IL > > On Oct 29, 2015, at 5:31 PM, bkbarney via CMLHope wrote: > > Hi all, > > Just saying hi! Wanted you all to know that I am thinking of you and > sending everyone a big hug and happy fall wishes... I know some of you > southern folks..will enjoy your 90 degree Florida temperatures coming > down...but us up north are enjoying the beauty of fall..it's cold today, > but should be back up in the 60's by Sunday....Indian summer.....I just > love it... > > did BCR on Monday..waiting for results..then will decide plan for next few > months... > > love, hugs and 18's to all, > > > Beth > > > -----Original Message----- > From: 'Icandoallttc' via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Sun, Oct 11, 2015 1:07 pm > Subject: Re: [CMLHope] Test Day > > Hi Beth > I can never go off the meds either. My counts will shoot up fast. > Good luck > ❤️ > > My Motto: Faith and Pills > Jeanie 🐟🐟18,s > Dx 1/2004. CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib January 2015 > Dr Balducci Moffitt Cancer Center > > On Oct 11, 2015, at 1:43 AM, bkbarney via CMLHope < > [email protected]> wrote: > > Dear Jeannie, Richard, Susan, Marty, et al...thanks very much for > responding to my question. I am scared, but want to try something to help > myself. We will see what Dr.Druker has to say. In the mean time, what I do > know, having been off of sprycel for months at a time to deal with major > surgeries several times, is that I always come out of remission, and > quickly. I don't hold without the sprycel. Usually the cells are showing at > very low numbers, but it means that without the agent that keeps them in > check, cancer grows. I wish this were not so. And I know it's not for some > lucky folks. Maybe with time, this will change for me. For now I am > developing a plan..will keep you all posted. > > love and 18's Beth > > > -----Original Message----- > From: Marty Gartenberg <[email protected]> > To: cmlhope <[email protected]> > Sent: Thu, Oct 8, 2015 5:56 am > Subject: Re: [CMLHope] Test Day > > Hi Jeannie, Beth, Richard as well as everyone on this site, > > I have a friend (not had a friend, and still have this friend) who had CML > a little while after I had my transplant. At the time there were no TKI's > but there were only two things available. One was a bone marrow transplant > which was in it's infancy at the time and the other was Alpha interferon > but on an early study basis which actually was a blind study. Depending on > if those in this study would be receiving this Alpha Interferon or a > placebo. > > Even before my friend I had to chose the Interferon or the placebo in this > blind study. I spoke with a lot of oncologists about what to do. However > there were no concise answers because on one hand there was something that > was still in a blind study and who would know if that would even be given > to this patient or would the BMT be the way to go? > > However, since there were no matching donors, but one, his brother who > refused, and I could never understand that, but since there were no other > choices he had no other choice but to try that blind study. Well he was > lucky enough to be accepted. And I have to tell you that he really suffered > some really bad side effects for years afterwards. > > Eventually they were unable to detect any more CML, but he still refused > to go off of the Alpha Interferon and I suppose this was a crutch in his > life so he still remained on it for many years. So I guess that he finally > decided to go off of it. Once that happened his life took a dramatic turn. > No more side effects and no more CML, and he is still alive and doing > remarkably well today. > > As far as me, well my only choice was the BMT because of two reasons. > Since my white blood counts were at the time over 486,000 and doubtful that > I would survive, but basically the same thing with the BMT but at least I > had my sister as a donor who just happened to be a perfect HLA match. So I > tried the BMT, and it worked. > > But yet there is still more to this story and some of you might remember > Zavie Miller and all three of us used to get together, and called ourselves > The Three Musketeers. This was well after Zavie got to know Dr. Druker and > he was started on STI-571 which when approved by the FDA turned into > Gleevec. > > So after that we all turned into The Three Musketeers. All of this is > ancient history but my point is that whether to go off or continue on the > TKI's because you may be actually "cured" of CML but you may still hold the > touch of the crutch. So you see that there are different strokes for > different people. > > Fortunately I don't have to make the choice because I already did and > believe me I really did suffer, but in the end it was worth it. > > Now knowing what I would do if my circumstances were different I think > that I would be off these TKI's and live my life, and if something happens > then you will have to deal with it, and you will. Remember a crutch is a > terrible thing to have. > > I spend a lot of time trying to help, and your all very special people to > me as I am to you. > > Those are my words of wisdom and please never forget what 18's stands for. > It is life yours and mine! > > 18's > > Marty > > > i > > On Thu, Oct 8, 2015 at 12:24 AM, Richard H <[email protected]> wrote: > >> Just a quick glimpse about a med break. The end of March when I went to >> the hospital with Vertigo, The short break I had on medicine did wonders >> for me. Found some I shouldn't have been taking, stopped some all >> together. I have felt so much better that I would do it again under total >> control. Worried? Yes, but I realized afterwards it should have been done >> earlier. >> >> Richard H. >> >> On Wednesday, October 7, 2015 at 4:27:30 PM UTC-5, Beth wrote: >>> >>> >>> HI Jeannie and all, ...I am due for BCR abl testing so should get it in >>> the next two weeks, results two weeks later...so I will update when I know >>> more...Had a consult today at the Block Center here in Illinois.People tend >>> to love him or hate him... I really like him. He thinks all my issues are >>> sprycel related. Thinks I should go off everything and have drug holiday to >>> give my autoimmune system a rest....steroids briefly to try and lower cpk >>> so I can move better without such a severe boomerang effect. Back issues >>> are no worse. That's good news from my end....since there have been several >>> of my fellow warriors here who have lost there remissions spontaneously >>> after years of successful treatment with their TKI's. I am scared to go >>> off, unless I have to ...ie. like I did for past surgeries....however, I am >>> thinking about it...perhaps I am just too toxic, and time off would help me >>> to rebuild and repair, and tolerate better the TKI"s when I re-uptake in >>> the future......so I am sitting with this decision..Not sure what I am >>> going to do...except pray, and listen to other's words of wisdom....I know >>> if I ask Dr. Druker, he would be fine with my taking a drug holiday..but I >>> emailed anyway......thoughts from my friends here???? >>> >>> >>> Love and 18;s, Beth >>> >>> -----Original Message----- >>> >>> >>> >>> From: 'Icandoallttc' via CMLHope <[email protected]> >>> To: cmlhope <[email protected]> >>> Sent: Wed, Oct 7, 2015 12:59 pm >>> Subject: Re: [CMLHope] Test Day >>> >>> Hi Beth and how are you?? >>> Would love to have an update on all. Thanks!! ❤️❤️ >>> >>> My Motto: Faith and Pills >>> Jeanie 🐟🐟18,s >>> Dx 1/2004. CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib January 2015 >>> Dr Balducci Moffitt Cancer Center >>> >>> On Oct 7, 2015, at 11:35 AM, bkbarney via CMLHope < >>> [email protected]> wrote: >>> >>> Dear Richard, >>> Sounds like good news all the way around. Hope your counts continue to >>> hold well and the November visit to the onc is a positive one! Your wife is >>> healing well..slow and steady. Thanks for sharing the good news....Keeping >>> you both in my thoughts and prayers. Beth >>> >>> >>> >>> -----Original Message----- >>> From: 'Icandoallttc' via CMLHope <[email protected]> >>> To: cmlhope <[email protected]> >>> Sent: Wed, Oct 7, 2015 9:26 am >>> Subject: Re: [CMLHope] Test Day >>> >>> Hi Richard and happy you are better. I hope your wife will be home >>> soon. >>> Prayers always. >>> >>> My Motto: Faith and Pills >>> Jeanie 🐟🐟18,s >>> Dx 1/2004. CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib January 2015 >>> Dr Balducci Moffitt Cancer Center >>> >>> On Oct 7, 2015, at 12:01 AM, Richard H <[email protected]> wrote: >>> >>> All is good at this house. Saw Kidney Dr. and my tests have improved >>> the last 3 times. Took my CBC and I am keeping my Hem. is holding at 10. >>> I hope it stays there until the end of Nov. when I visit my ONC. >>> >>> My wife is improving, and will see the Dr. Oct. 21st to see if she can >>> start putting weight on the right side. Shoulder seems to be healing >>> nicely. She has the healing knot on the shoulder and is feeding herself >>> with her right hand and is raising the upper arm to almost shoulder height >>> without pain. We are hoping she can come home in Nov. when she can get out >>> of the wheel chair and up and down without help. Due to heart surgery and >>> a pacemaker all I can due is call for help if she has a problem. >>> >>> 18's >>> >>> Richard H. >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> For more options, visit this group at >>> http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/d/optout. >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> For more options, visit this group at >>> http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/d/optout. >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> For more options, visit this group at >>> http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/d/optout. >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> For more options, visit this group at >>> http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/d/optout. >>> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> To unsubscribe from this group, send email to >> [email protected] >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to [email protected]. >> For more options, visit https://groups.google.com/d/optout. >> > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
